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Break the Stigma: A Mother’s Story (Part 1)

May 5 is National Children's Mental Health Awareness Day. Starting today, we will hear from Kathy, a working mom of two children experiencing mental illness.

May is Mental Health Awareness Month. It is a fitting time for me to share our story. The end is still to be written, but I believe it will be a good one.

As I write this, it is important for me to share a few thoughts first. Every person’s story is different so this writing represents ours. While I am writing this now, as it has many times in the past, my heart hurts for the parents, families, caregivers and children who live with mental illness, not because it is hopeless, it is not, but because it is so hard. What I am sharing are some of the experiences we had, however I can’t help but believe it shouldn’t be this hard to get the help your children need.

My son Max began having symptoms during the fall of his 6th grade year. His first diagnosis was PANDAS (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Strep), and he was ultimately diagnosed with an anxiety disorder at the Pediatric Anxiety Clinic at Mayo Clinic. We went through a great deal before we got to that point; none of which was easy or fast. This included many doctor appointments, referrals, authorizations for specialists, testing, medication, counseling, alternative therapies, and homebound schooling.

Max missed more than 170 days of school over his 6th and 7th grade school years. It would take me three hours many mornings to try and get him out of bed and to school. He would experience sleep abnormalities (I don’t think we slept a night through for 2 years), hyperventilation, shaking and become completely despondent. If he made it through the day once he got there, he would fall asleep before I got home from work because he was so drained. I am a well-educated, healthcare professional working as a child and family advocate, but as a parent I wasn’t trained to know how to handle this. I didn’t know what to do, I felt so helpless and desperate. It was painful and exhausting for both of us.

Many people didn’t understand: anxiety is not logical and it is hard to explain. What makes our story worse is the way misunderstanding and stigma affected the situation. Max’s middle school administrators did not believe that he was suffering from a medical condition. I attended many meetings with 5-6 representatives from the school sitting around a table, asking me how I disciplined my son, how I knew he wasn’t up playing video games all night, telling me that his medication obviously wasn’t working, and that he was going to be truant. I began taking a friend to each meeting just so I could have an objective listener and witness. Max has never been disrespectful or in trouble. He is an A student.

In the fall of Max’s 7th grade year, we began the school year trying again to get to school. In September, the 7th grade class students had the opportunity to sign up for a trip to Washington, DC the following June with Max’s favorite teacher. We attended the meeting and turned in the paperwork. Max returned the paperwork to me and shared that the teachers were worried about him taking his medicine. I emailed the contacts and shared that I hoped Max would be able to attend and that I would pay for the trip to hold a place for him, hoping we were successful in treating and managing his condition so that this long anticipated rite of passage could become a reality. I was told that school administrators had decided this opportunity would not be available to Max because he had to focus on school attendance.

Kathy and Max's story will continue tomorrow.

Click here to learn more about mental health services available to parents. Have a story to share about your child’s mental health? Visit Speak Now for Kids on Facebook or tweet using #HeroesofHope